Laura Case, physical therapist at Duke University Medical Center reminds persons with neuromuscular disorders that there are numerous technologies available to help disabled persons lead a full life.
As Ms Case implies in this interview, just because you can walk somewhere to maintain your walking ability and strength, if you are too tired to do anything when you get to your destination, a quality of life is being lost. Similarly, not taking advantage of the technology available can limit the number of places a person can go and things they can do.
We talked to Ms Case at the Pompe disease patient meeting held at Duke University April 9, 2017.
About Pompe Disease
Pompe disease is a rare lysosomal disease that may present in childhood (early-onset) or in adulthood (late-onset). In both cases, the disease is due to a deficiency in the enzyme alpha-glucosidase (GAA). Symptoms vary greatly in this population but can be severe and ultimately deadly in the early-onset type. Patients with laste-onset Pompe disease will often grow up being able to walk but begin to lose muscle stength as they age. Many of these patients will require technology to help them be ambulatory.